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Who was it that said being in support groups leads to poor outcome?

Discussion in 'PsychoSocial ME/CFS Research' started by JaimeS, Jul 24, 2018.

  1. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Halp. Looking for a resource on this? I'll start the hunt through Phoenix Rising, but if someone has it handy, I'd really appreciate it.
     
  2. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Last edited: Jul 24, 2018
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    @JaimeS this one from Wessely mentions it as well

    Psychological Medicine 2006 INVITED REVIEW The act of diagnosis: pros and cons of labelling chronic fatigue syndrome MARCU S J. H. HU IBER S1 * AND SIMON WESSELY2

    in the section on good old 'illness perception'
    Ultimately, a pessimistic illness perception can become a self-fulfilling prophecy of nonrecovery. This group of CFS patients tends to view their symptoms as part of an overwhelming, mysterious, unexplainable disease that struck them out of the blue and from which they most likely will never recover. These illness expectations are often fuelled by the media, support groups (not least because support groups have an inherent bias towards those who have not recovered) and other sufferers, as we will discuss in the following section.

    in the section on Diagnosis
    Diagnosis may send patients in the direction of support groups, with their overrepresentation of chronic sufferers and frequent anti-psychiatric attitudes, although we should acknowledge the distinction between bona fide patient organizations and radical Internet pressure groups that are waiting for the still elusive ‘medical breakthrough’



    http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.568.3530&rep=rep1&type=pdf


    what arseholes these people are
     
    Last edited: Jul 24, 2018
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  4. Sean

    Sean Senior Member (Voting Rights)

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    Indeed. Their arguments are straight propaganda framing. They offer no proof that their interpretation is correct, nor disproof others are incorrect.
     
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    I am sure that this goes back to 1989 or 1990. I will start looking.
     
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  6. chrisb

    chrisb Senior Member (Voting Rights)

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    "Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the "M.E. Society" (sic), which advocates total rest."
    Psychiatric Perspectives: An Overview TO Woods DP Goldberg
    British Medical Bulletin (1991) Vol 47 No 4 pp 908-918 @p912

    No reference is quoted, but I am fairly sure it was used earlier.
     
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  7. Webdog

    Webdog Senior Member (Voting Rights)

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    This is just somewhat related.

    I remember Healthwise having some warnings about "CFS" support groups in the past. Unfortunately, I never thought to save such pages.

    Currently, Healthwise encourages support group participation, but has some warnings, including "Some groups may cause more harm than good if they don't have a positive and empowering approach."

    https://healthy.kaiserpermanente.or...cyclopedia&ctype=kb&locale=en-us&hwid=hw33387

    group.png
     
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  8. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    I'd love to know the earlist reference to this too. Was there ever a study that showed correlation which the BPS brigade then used to claim supported their causation beliefs or did it all come straight from their imagination?
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My memory is that studies of CBT going back to Chalder and Wessely's stuff from the early 1990s looked at the correlation between recovery with treatment and persisting belief in a biological cause but I do not remember support groups being mentioned in that sort of data.

    The bit from Wessely quoted by @NelliePledge is so ironic. It seems the 'pessimists' actually understood the nature of the illness recorded in the literature rather better than the authors. It just goes to show how this 'academic discipline' of psychological medicine can be nothing more than propounding popular prejudice dressed up with long words.
     
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  10. dreampop

    dreampop Established Member (Voting Rights)

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    I'm pretty sure wessely had 2000 or 2001 report to U.K government on CFS and included that comment in it. If you dig through old Wessely papers I'm sure you can find it. AFAI it was support groups, litigation (i.e. disability), believing your illness is biological and 1 more that worsened outcomes.
     
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    "Sharpe et al (1992) in a prospective study of patients with myalgic encephalomyelitis seen in an infectious diseases clinic find that attributing the causes of ongoing symptomatology to solely physical causes, and participation in an ME support group, are independent predictors of ongoing disability at two-year follow up. The meaning of the latter result is unclear; it may reflect more severely ill people seeking the support of other sufferers, or it may be that the attributions and advice of support groups perpetuates disability.

    Sharpe M, Hawton K, Seagroatt V, Pasvol G 1992 Follow up of patients presenting with fatigue to an infectious diseases clinic. Br Med J 305: 147-152."

    Somatisation, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome.
    Susan E Abbey
    1993 Chronic fatigue syndrome. Wiley, Chichester (Ciba Foundation Symposium 173) p238-261 @p243
     
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  12. alex3619

    alex3619 Senior Member (Voting Rights)

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    I have a reply for positive thinkers these days, keep your religion to yourself.
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Also found it here:
    "
    Self-help groups and patient associations perform a
    valuable role in some conditions. This may be true for
    ME,22 but membership of an ME group predicts a poor
    outcome,16 and those referred to hospital specialists are
    more likely to be members than those managed by
    primary care.23 It is conceivable (but further studies
    would be needed to test) that this association is causal
    if, like a religious sect, the group process perpetuates a
    non-adaptive set of beliefs and behaviours around ME."

    https://academic.oup.com/jpubhealth/article-pdf/18/3/343/4380046/18-3-343.pdf

    eta:1996 I think

    eta: I think the one that you are looking for was in 1992 by Sharpe
    quoted in this book https://books.google.co.uk/books?isbn=0470514396
     
    Last edited: Jul 24, 2018
  14. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I second that.
     
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  15. Sean

    Sean Senior Member (Voting Rights)

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    Oh the irony.
     
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That figures. I seem to remember there was some discussion about slightly discordant results relating to beliefs between Chalder and Sharpe groups in the mid 1990s - there being differences in beliefs about causal attribution and beliefs about the possibility of improving or some such, when it came to irprovement at follow up.
     
  17. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    From the Sharpe et al 1992 paper referenced above:
    "Follow up of patients presenting with fatigue to an infectious diseases clinic"
    Michael Sharpe, Keith Hawton, Valerie Seagroatt, Geoffrey Pasvol, BMJ Vol. 305, 1992

    Concluding paragraph:
    So were the prospective studies ever done reliably? Or is it just a matter of belief that the causation goes in the direction they prefer?
     
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  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Not that I know of. It seems strange that a hypothesis presented over 20 years ago has not only never been confirmed with reasonable evidence, but is assumed as a fact by some people.
     
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  19. Barry

    Barry Senior Member (Voting Rights)

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    Yep!
     
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  20. Barry

    Barry Senior Member (Voting Rights)

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    Let alone the hypocrisy.
     

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